For those of you on home hemo how have your diet and meds changed? I know that all our diets are different, but wish to compare (in general) the changes between home hemo/slow nocturnal and in-center dialysis. Thanks in advance, Lin.
Lin as you know I do short daily, the biggest thing for me is that I do not have to think about controlling my fluid intake. I usually take off between 1 and 2 kilos, compared to 3 to 4 kilos when I was incenter. I would also say that I am more relaxed when it comes to phosphorus and potassium but I still take binders and limit foods that are high in either.
Lin, On nocturnal dad doesn’t have to watch anything.
I am doing short daily but in a slow nocturnal program, because of the conductivity problems I have been having. if all goes well with today’s treatment I will try slow nocturnal again.
regardless, my diet has become much more liberal. I started out by craving fresh fruit. my last labs they told me to up my phosphorous because it was getting too low. oh the pasta fagioli, lentil soups, cheese and even colas and a beer here and there!
they tell me to eat like a “normal” person and I am wondering if I can remember how.
What sort of conductivity problems?
Thanks for all the replies! My concern is that because I’m a younger person on dialysis that the diet will eventually affect me negatively. It’s walking a fine line between good labs, and good nutrition. I feel I was healthier when I was able to have a more liberal diet, but chose one with little meat and lots of fruits, vegies and fiber.
Fluid is not an issue for me, not in the traditional sense. I don’t need fluid removed, lose too much on incenter dialysis, and in addition can dehyrate readily, as I like Helen have pkd. I just need toxin removal so removing any fluid at all at this point is wiping me out. It can’t be readily replaced so I go from tx. to tx. trying to replace lost fluids. Thought home hemo could somehow help with both nutrition and fluid concerns.
Helen, your diet sounds like what I’m aiming for, and love the pasta fagioli! You can have the beer, I’ll have Mudslides or Strawberry Dacquiris. Oh to be normal again! Lin.
Lin, I have seen you post the question on how they handle fluid removal on slow nocturnal with patients like yourself that don’t need it. I finally remembered to ask that question at our last clinic visit. I was told they just didn’t have the patients turn the UF on. One of the best things I think about home hemo is the training period. When you train for 5 to 6 weeks, you really get to use the trial and error method to determine what makes you feel good and your in the safety of a trained nurse. I think the nurses who train home patients are much more open to the opinions of the patients because they strive toward making your own dialysis successful. They know you are
going to be in charge and they want to make sure it is working for you. It’s none of this hurry up and take chances attitude.
Thankyou so much for that info. Marty. It never occured to me that I could do that because I’m so used to the in center rules, and a negative tmp is always a concern. It may seem like a small problem but for me it’s a very big one. I don’t need any fluid removal, lose more than machine is set to take off and in addition “dump” the prime and rinseback because I can urinate adequately. Giving back saline doesn’t work so I leave most tx days 1.5 under dry weight. It’s likely part of the reason I’m turning into a human slug lol Thanks for that info… Lin.
Lin the Aksys could be a good fit for you since you don’t need fluid removal. The Aksys does a process called backflushing - it infuses 200ml of fluid through the dialyzer every 15 minutes (the amount and frequency is adjustable - 200/15 is the max) this helps to keep the dialyzer clear and it increases the UFR. Your UFR on the Aksys with no net fluid removal would be .8 - bet that would be a first for you.
Bill, does the machine do this flush because there isn’t a heparin pump? Or do they have 1 now.
Thanks Bill! I wish I could twist someone’s arm at the unit I’m in so that they would consider the AKSYS. Such a machine sounds almost too good to be true.
Actually in regards to fluid removal the FMCK machine I’m on now is set for .5 and dfr of 800 . I lose a lot more than planned. A lot of pkd pts. do this and most staff isn’t used to us so lots of us suffer the ill effects. I’ve been doing this for three years and it does get tedious explaining it to staff, and accounting for the cramping, headaches ect… To them I’m only losing the .5. I comanage a pkd group of over 1000 pts…, many of which are on, or soon to be on dialysis. From what I’ve read and heard you talk about it would be super for pts. like me. I tell my neph. every visit (last was yesterday) that I want home hemo. He sais it’s certainly something “they” should dicuss. Then he pitches getting a txp. for me! They’re a new unit as of Jan.04 so don’t want to be too pushy but… printing out the info. on the AKSYS, just in case they don’t know where to find it lol Is it more expensive than other machines, because if so that could possibly be a drawback to units wanting to start home programs. Thanks Bill, Lin.
My understanding is that the backflush was never intended to take the place of a heparin pump but it was hoped that it would let people use less heparin and just use a heparin bolus for short runs (2.5 hours or less). The real benefit of the backflush process is that a higher UFR leads to convection. My understanding is that a UFR over 1.0 creates convection.
Convection is another way for molecules to move across the membrane. Diffusion is the main way that molecules of waste move across the membrane but to draw water off I think you need convection. This is from:
Principles of Dialysis: Diffusion, Convection, and Dialysis Machines by Robert W. Hamilton:
“Because the spent dialysate effluent pump creates negative pressure on the dialysate compartment of the membrane unit and the blood pump creates positive pressure in the blood compartment, there is a net hydrostatic pressure gradient between the compartments. This causes a flow of water and dissolved substances from blood to the dialysate compartment. The process of solute transfer associated with this flow of water is called “convective transport.”
So the pressure difference, also known as the Trans Membrane Pressure (TMP), is how fluid gets drawn off and since most patients dialyze at a UFR under 1.0, not much small molecule solute transfer takes place but I think at UFRs above 1.0 small molecule solute transport will take place due to convection. So, if my understanding is correct, once convection is occurring you get more bang for your dialysis minute.
I think that early in 2005 the Aksys will have a heparin pump and then it will be available for long runs (6 hours or more).
as Lin said, I have PKD too and until recently have not needed fluid removal. when on the same machine, Fresenius H2000K, doing training 3X a week, 3 hours, just pulled 500 ufs, about the same as prime and rinseback.
this summer during high heat and humidity days my ankles blew up like balloons. may be partially due to a motorcycle accident I had last year when I broke both, as well as other bones. during dryer, cooler days the edema is much less.
I now pull about 1500 which leaves me dry as a bone. I have also cut back on fluids and am not happy about it. I’m not sure its good for me either but when I see my new nephrologist I will discuss it. my current neph has never even examined me physically.
Bill thanks for the info. Our center has put patients who want daily dialysis on the Aksys. I am looking forward to when the machine is geared more for longer runs; then I think I’d like to give it a try. When you 1st started posting on the Aksys I believe you mentioned you didn’t like the noise but felt this could be corrected. Did Aksys quiet the machine any?
Does AKSYS have a 1-800 # ?
What does heat and humidity have to do with edema?
Does AKSYS have a 1-800 # ?
What does heat and humidity have to do with edema?
Aksys’ toll free number is 877-229-5700 and the website is http://www.aksys.com.
Here is a link to a medical library website that discusses edema and causes and symptoms. It says: “Heat. Warm temperatures cause the blood vessels to expand, making it easier for fluid to cross into surrounding tissues. High humidity also aggravates this situation.”
http://www.chclibrary.org/micromed/00046340.html
It also says that salt and too much fluid contribute to edema, along with certain drugs and a number of other health conditions (listed).
Marty, the machine is quieter - some what - but there is no way around the fact that it is noisier than a ‘standard’ machine simply because it is cleaning itself post treatment for about 6 hours and getting ready for treatment for about 7 hours prior to the actual treatment. So while a standard machine would be ‘off’ for that entire 13 hour process the PHD is busy whirling and clicking.
During treatment it is a bit quieter than it was at first but I also think that I have grown accustom to its noise so that it is not an issue, even when I was doing the nocturnal studies the machine noise did not bother me.
How would one get their home txs if in an area where there are power outages?
This is very timely due to the news from Florida. If my power was out I would look to back-up incenter. If the center’s power was out too (from a hurricane or more likely for me a big earthquake) then I would be in the same boat as the incenter patients. Like all dialysis patients should be, I’m prepared to follow an emergency diet in case dialysis is unavailable in the short term.